Kristin Z Black1, Alexandra F Lightfoot2,3, Jennifer C Schaal4, Mary S Mouw5, Christina Yongue6, Cleo A Samuel7, Yanica F Faustin8, Kristen L Ackert9, Barbara Akins10, Stephanie L Baker11, Karen Foley12, Alison R Hilton13, Lilli Mann-Jackson14, Linda B Robertson15, Janet Y Shin16, Michael Yonas17, Eugenia Eng2. 1. Department of Health Education and Promotion, East Carolina University, Greenville, NC, USA. 2. Department of Health Behavior, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 3. Center for Health Promotion and Disease Prevention, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 4. The Partnership Project, Inc., Greensboro, NC, USA. 5. Division of Geriatrics, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 6. Department of Public Health Education, University of North Carolina at Greensboro, Greensboro, NC, USA. 7. Department of Health Policy and Management, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 8. Department of Maternal and Child Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 9. Association for Nonsmokers-Minnesota, St. Paul, MN, USA. 10. Behavioral Health, Cone Health System, Greensboro, NC, USA. 11. Public Health Studies Program, Elon University, Elon, NC, USA. 12. University of Pittsburgh Cancer Institute, University of Pittsburgh Medical Center, Pittsburgh, PA, USA. 13. Durham County Department of Public Health, Durham, NC, USA. 14. Department of Social Sciences and Health Policy, Wake Forest School of Medicine, Winston-Salem, NC, USA. 15. UPMC Hillman Cancer Center, University of Pittsburgh, Pittsburgh, PA, USA. 16. Georgia Department of Public Health, Atlanta, GA, USA. 17. Social Innovation, Research and Special Initiatives, The Pittsburgh Foundation, Pittsburgh, PA, USA.
Abstract
Background: Cancer patients can experience healthcare system-related challenges during the course of their treatment. Yet, little is known about how these challenges might affect the quality and completion of cancer treatment for all patients, and particularly for patients of color. Accountability for Cancer Care through Undoing Racism and Equity is a multi-component, community-based participatory research intervention to reduce Black-White cancer care disparities. This formative work aimed to understand patients' cancer center experiences, explore racial differences in experiences, and inform systems-level interventions. Methods: Twenty-seven breast and lung cancer patients at two cancer centers participated in focus groups, grouped by race and cancer type. Participants were asked about what they found empowering and disempowering regarding their cancer care experiences. The community-guided analysis used a racial equity approach to identify racial differences in care experiences. Results: For Black and White patients, fear, uncertainty, and incomplete knowledge were disempowering; trust in providers and a sense of control were empowering. Although participants denied differential treatment due to race, analysis revealed implicit Black-White differences in care.Conclusions: Most of the challenges participants faced were related to lack of transparency, such that improvements in communication, particularly two-way communication could greatly improve patients' interaction with the system. Pathways for accountability can also be built into a system that allows patients to find solutions for their problems with the system itself. Participants' insights suggest the need for patient-centered, systems-level interventions to improve care experiences and reduce disparities.
Background: Cancer patients can experience healthcare system-related challenges during the course of their treatment. Yet, little is known about how these challenges might affect the quality and completion of cancer treatment for all patients, and particularly for patients of color. Accountability for Cancer Care through Undoing Racism and Equity is a multi-component, community-based participatory research intervention to reduce Black-White cancer care disparities. This formative work aimed to understand patients' cancer center experiences, explore racial differences in experiences, and inform systems-level interventions. Methods: Twenty-seven breast and lung cancer patients at two cancer centers participated in focus groups, grouped by race and cancer type. Participants were asked about what they found empowering and disempowering regarding their cancer care experiences. The community-guided analysis used a racial equity approach to identify racial differences in care experiences. Results: For Black and White patients, fear, uncertainty, and incomplete knowledge were disempowering; trust in providers and a sense of control were empowering. Although participants denied differential treatment due to race, analysis revealed implicit Black-White differences in care.Conclusions: Most of the challenges participants faced were related to lack of transparency, such that improvements in communication, particularly two-way communication could greatly improve patients' interaction with the system. Pathways for accountability can also be built into a system that allows patients to find solutions for their problems with the system itself. Participants' insights suggest the need for patient-centered, systems-level interventions to improve care experiences and reduce disparities.
Entities:
Keywords:
Cancer health disparities; community-based participatory research; racial equity; systems-level interventions
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